I went to Macmillan for help following a relative's diagnosis with cancer, they refused to help because 'existing mental health conditions' meant that I fall outside of their remit.

CrohnicallyAspie · 24/08/2015 15:10

Just remembered, I lookedfor this thread to post this aspectsofaspergers.wordpress.com/2010/12/23/asperger-syndrome-and-fatigue/

LeChien · 25/08/2015 14:34

That's very interesting Crohn, thanks for posting it.

Gumblebee · 25/08/2015 16:10

Thanks for that link, Crohni; it was good to read as I'm impatient with myself for the same things.

onlyoneboot · 26/08/2015 17:01

Hello, can I ask anyone referred through their gp how long it was before assessment? I know it will vary widely and it's only been 2 months since I was referred but when my gp said it shouldn't take long I fixated (unrealistically) on it taking 2 weeks and I could do with a slightly more realistic timescale so I can stop wondering if my referral has been lost. Or should I have heard something? Not overthinking this at all, obviously

ALittleFaith · 26/08/2015 17:25

only I was referred a year ago...service changed. I sent in questionnaire I received in April and I haven't heard anything since.

Gumblebee · 26/08/2015 17:31

I was told anything between a year and two years but that I could go on a cancellations list. I think it was somewhere between 8 and 12 months but I don't really remember.

CrohnicallyAspie · 26/08/2015 17:55

only I would chase it up. My first referral, 2 months of nothing and I asked the GP again, 2 months later I moved house and GP practices so they chased it up... The referral was never put in! So my new GP did it and it only took a few weeks to receive an appointment letter (for an appointment 2 months later- ie referral in Nov, letter in Dec, initial appointment in Feb).

iamaboveandBeyond · 26/08/2015 18:32

Just over a year between OT referral and first appointment. Still waiting for second appt...

onlyoneboot · 26/08/2015 19:34

Thanks everyone. Think I need to make a phonecall (hate making phonecalls) just to check the referral has actually gone in, that's what I'm worrying about. I haven't told anyone about it except DP, also probably AS but doesn't feel the need for answers like I do.

Gumblebee · 26/08/2015 20:48

I'm not convinced any of us enjoy phonecalls... They'll be used to people being crap on the phone, I suspect.

CrohnicallyAspie · 26/08/2015 21:13

Don't know if I've mentioned this on here before, but does anyone else make phone calls like this:
Internal voice: better ring Sue, can't put it off any more, what shall I say, hi Sue it's crohnically. Nope, not businesslike enough. Good morning, is that Sue? But what if a man answers? Good morning, may I speak to Sue please? Perfect!
Ring ring, ring ring, ring ri hello...
"Good morning, may I..."
Sue is out of the office at the moment, if you'd like her to call you back please leave your name and number after the tone

Internal voice again: right, need to leave a message. What did they say I needed to leave? Name and number. Crohnically, 0123456. No, that's a bit short and abrupt. Good morning, it's crohnically, could you ring me back on 0123456. That'll do.
Ring ring, ring ring, ri hello... Sue Smith
".... "
hello?
".... It's crohnically, can you, erm, can I, Sue? What was I phoning you for again?"

CrohnicallyAspie · 26/08/2015 21:16

Just remembered something I meant to ask while Mn was offline. Does anyone else get really stressed (as in close to meltdown) when you lose something? DH thinks I'm overreacting, (which I probably am, but that's not the point. I know you can (in this instance anyway) replace whatever or do without it, but it's the act of losing it that stresses me, the loss of control it implies, not the fact that it is lost.

Gumblebee · 26/08/2015 21:16

Yes, but it's the same for every conversation, not just phone calls.

You write it perfectly

Why do people deviate from what I have planned they will say? that's what I'd like to know

onlyoneboot · 26/08/2015 21:22

Crohn that sounds very familiar indeed. I'm actually worried about phoning in case I sound too good because I'll have geared myself up. Of course beyond what I've rehearsed is unknown. And it'll be a receptionist. And a phonecall is not an assessment.

onlyoneboot · 26/08/2015 21:25

Gumble at people not sticking to script.

CrohnicallyAspie · 26/08/2015 21:28

Conversation moves faster, I speak first, think later (then do that thing of frantically trying to backtrack but actually making things far, far worse)

(You know what I mean- go shopping, friend sees nice top, you say 'yes, that will look lovely, it's cut to flatter a larger stomach. Not that I think you have a large stomach, but everyone could do with a really flattering top in their wardrobe. Not that I think the top you're wearing isn't flattering, I mean I wouldn't wear it but it suits you, I don't mean it's ugly or anything just not to my taste...)

rivierliedje · 26/08/2015 21:30

Crohn I often write out what I'm going to say on the phone and then get totally flustered anyway. Otherwise completely normal and easy sentences get completly jumbled when a phone is in the way.

Gumblebee · 26/08/2015 21:34

Oh yes. Conversations go off-piste pretty quickly and I have to revert to on-the-fly stuff, which, as you point out, can leave a lot little to be desired, diplomatically

In your phone scenario, of course, once you've prepared yourself for the answerphone, you ring a second time and end up with a person instead of a machine and get TOTALLY tied up, and there isn't even the option of squeaking and hanging up.

CrohnicallyAspie · 26/08/2015 21:35

I managed to get my DOB wrong once when speaking to the hospital, I don't know why as I have to say it so many times!

ALittleFaith · 26/08/2015 21:37

I overcame phone calls through exposure therapy - in that in my job I have to take calls and make calls so much for work it doesn't really phase me any more. I do have rehearsed phrases though. I was thrown yesterday when I called someone all prepared to leave a message (she's often out of the office) only for her to answer! I just laughed and confessed I was geared up to leave a message and it was ok.

Losing things, argh, yes Crohn. I am horrendous at this. I'm scatty, I lose things and I react so much DH does get driven crazy.

CrohnicallyAspie · 26/08/2015 21:37

Sometimes at work I have to ring parents to say that little Johnny bumped his head today, they get all panicky because from the way I am speaking they assume something has gone really dramatically wrong, they're prepared for him being blue lighted to hospital and I'm like 'oh no, I can't even see a red mark'

CrohnicallyAspie · 26/08/2015 21:41

That's what makes it worse faith i'm not actually that scatty. I have filing systems, I stick to them, I have a pretty good visual memory and can often picture where something's been left or figure out where I am likely to have left it (eg where are my car keys? Well, I came inside and put the shopping backs on the table before getting on with dinner, oh here they are next to the oven). Yet those really important things that you don't even use that often and have a designated safe storage place- passport, birth certificate, that sort of thing- are never where I bloody left them!

And DH just sort of comes home and his pockets explode everywhere, paperwork stays where it falls (that's if he even bothers to open the letter) yet he never loses anything.

Playnicelyforfiveminutes · 26/08/2015 21:46

I have always been scatty, forgetful, and generally useless.. I don't know if I have the balls to claim it is a medical condition.. Not with a straight face, but I qualify according to the criteria, and if i lived in America I'd be all over the adderall etc. Unfortunately in England I will have to accept that I'm just a bit crap.

Playnicelyforfiveminutes · 26/08/2015 21:49

Hahaha I do exactly the same chronically! That is exactly how I am.... How nice to know I'm not alone !

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